My BIG Decision

Have you ever had one of those decision that will impact the rest of your life? Besides having kids ha! I haven't been writing for awhile which I am truly sorry for. I have all these great intentions and even think "I need to write a blog about this" but then sadly my fingers haven't made it to the keyboard.

In our family we have some pretty big news. I wish it was better news like we were having a child or something or I got a new fur baby yet again.


After my second brain surgery I went into remission. Everything was looking up in the world. I started losing weight, was feeling better etc and then I started to notice month 3 that small things were happening again. Did some testing and I am not in remission.


I am not a candidate for a third surgery. I went to the two best surgeons in the USA. When you do that there isn't much chance they are going to find something again. Let alone maybe one cell that was left behind. I do not want my whole pituitary taken out because then I am dealing with 11 hormones for the rest of my life. That isn't something I want for myself.


Cushings has been with my body for a long time. It makes you feel crazy sometimes too like you are a hypochondriac. Like "do I really have this?" or "Am I just crazy?". Its a disease  that I wouldn't wish on my worst enemy. It robs you of so many things. Your body, your health, your life . So now I sit worried what are we going to do? I cant have this rob me for the rest of my life.


I have truly amazing doctors. One is my Endocrinologist Dr. Cohan. He is this amazing guy who even when he is telling you bad news he says it so gently that it hasn't sunk in till you are in the car. HA! That is a Doctor that I want on my side. He gives you options. He doesn't push you on those options either, which is what I expected but it never happened. He educates you on each thing and lets you do whats best for your body and you.I had a couple options. One of them was taking a Cortisol Blocker Drug, one was taking out my Adrenals and one was Radiation which we both didn't really agree on.


I chose probably the more drastic one. To have an Bilateral Adrenalectomy. This is not a decision I took lightly though, as it will be something that gives me Addison's Disease for the rest of my life.

What is Addison's disease? (taken from MedicineNet.com)

 The disease is characterized by weight loss, muscle weakness, fatigue, low blood pressure, and sometimes darkening of the skin in both exposed and nonexposed parts of the body.


Its something that I really have to watch and will be dependent on Cortisol for the rest of my life. One thing that used to be my enemy is now going to be my friend. Where stress whether good or bad will cause me to have to monitor in my impute even more.


I personally just don't want Cushings anymore. I feel like I have taken the steps to get it out of my body. It makes me feel like I am not living my life the way I should and always have. Cushings in some way has robbed me of who I really am. I always try to be VERY positive on things. This disease has worked on me and my positivity. I will not let it win though. I just wont.


I have more tests to take to make sure that this is without a doubt a reoccurrence. To me that is a good doctor. I am about to do something pretty dramatic by taking out both my adrenals. I remember sitting in the office with him, I started to cry (which I hate to do in front of people). I asked him "Are you sure that I have Cushings? Is there anyway I could possibly have anything else". He looked at me and I already knew my answer.


I have a lot of faith in my Doctor. I know this is not always he case with those who have Cushings. I am lucky enough to have always had good Doctors along the way. Blessed really. He is someone I completely trust. I know he has the skills and the energy to deal with me. He gets back to me right away and doesn't let me stress even further. His office staff is great. That's a bonus too! I had an amazing Endo before but I knew when I went to Dr. Cohan that it was someone who I wouldn't be leaving. When you trust in your Doctor and can have a good working, professional relationship with him....it really helps!


So at the end of the month pending my tests I will be going in for my BLA. Cushings will forever be gone. I will not be able to produce ANY cortisol. I wont be sad its gone! I will be throwing a party (ok maybe after recovery haha). I know it wont be an easy road as I will be Adrenal Insuffiencty and have to really watch that. I think that is something I can manage though with diligence and paying attention to my body. I have to manage it. I will have no choice.


I am ready to go to the next Chapter of my life. I am ready to live a better quality of life. I turn 40 weeks after my surgery. Its like the best present in the world to me to not have Cushings anymore.


It took me a long time to write this as I was almost afraid to put it out there in the world. Gods got my back though and Dr. Cohan. I am thankful and in my prayers each night I thank God for all the people in my life who give me strength and support. My friends, family and Cushies always surround me with love. I am so thankful for that!


I don't talk about Cushings a lot on my blog as its a personal blog about Ranching, my Teens, my Family and our life. Cushings has been a big part of it though so you will see some posts throughout the year. Soon......you might never hear the word be uttered out of my mouth ever again:) And that folks makes me ecstatic!


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Imprisoned? I am breaking out!

For three weeks I have been imprisoned to my bed! Ok its not THAT dramatic. I had two surgeries on October 1, 2015. Pituitary Surgery to remove a Brain Adenoma and then sinus surgery. It was a two for one special. Since I had both surgeries the doctors told me strict bed rest for three weeks.

Its week 2 and 5 days! I cant do it anymore!!! Its funny how people will say to me that they would love to stay in bed for three weeks. It drives me totally crazy. There is only so much cooking channel (which I love) and being on Facebook that I can do without going mad insane.

So I decided today that I am going against the system and being a rebel! By being a rebel I mean sitting in other places of my home and taking a cart ride to see all my animals that I haven't even seen  (besides the dogs) since my homecoming. Don't worry all my babies have been well taken care of by my family.

I have to admit if I am going to be stuck in bed its nice that I haven't had to worry about cooking, cleaning or laundry. My MIL has been here with us helping and making delicious meals each day. I told her that she is acting like she is our maid. I hate that but she said she is bored and likes it. Makes me feel bad. Even though I appreciate it a lot! We couldn't do it as easily without her being here. Makes it so Ryan can work and the kids still are under watchful eye of all of us.

So today I am being a rebel. Tomorrow you will get great pictures of all my  fur babies! I fully know that I will tire myself and want my bed back by midday. Mil and Ryan are letting me up and about....we will see how long it lasts. I think I can at least make it till noon! Ha!

Its pretty bad that at 39 being a rebel for me is getting out of my bed. One more week and 2 days and I will be all over the place so watch out people! :)

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Why was I MIA for a month?

Long story short....I was kidnapped and taken to an exotic place to have an amazing time. Ok Wake up RAE! That is not what happened! As you all know I have Cushings Disease. Its a tumor that secrets this crazy amount of Cortisol in my body. I have gained obscene amount of weight, lost muscle, have extremely high blood pressure, pre diabetic, and the list goes on. All because of this crazy 4mm tumor on my pituitary.

Lets make this story short okay or your eyes might roll into the back of your head like mine practically did. I was headed to Texas from California for my Brain Surgery. 3 hours before we were leaving to go to the airport I get a call from the hospital and said my insurance (which they had for a month) would not pay for out of state. NOW you tell me???

Sobbing, crying, sniffing, and then picking myself up off the floor I started to make another plan.

Long story short.... Looking at tons of Neurosurgeons we find Dr. Kelly in Santa Monica who is the head of all Neurosurgery there and had TOP RATINGS! So I contact him. God was in my corner as usual and he said he would see me. He has a waiting list but he would see me. He would have to make his endo see me, he would have to see me etc to diagnose me himself with Cushings.

Again long story short. MIL watched the teens and we headed out to Santa Monica only expecting to be gone 1 week for testing, and seeing all the doctors, new MRI, cat scans etc. While we were there though he scheduled surgery (YAH!) It was still a couple days away but not really enough time to drive 13 hours back and then come back again. So MIL said to stay. Between my dad and stepmom, MIL and my husband I everything got taken care of so I could have my surgery.

October 1st I had surgery. Oct 2nd my cortisol plummeted. I was in remission! That tumor was gone! I had the best team of doctors anyone could even ask for! I cannot even express how thorough and amazing that team was!!! I do not have high blood pressure anymore, not diabetic, lost 15 pounds in one week, and slowly will gain muscle back. I am sure I am missing a lot of important details but I just wanted to get all of you back on track to where I am at now.

Did help that we had gotten a vacation rental to stay in while recovering and while we were doing all the testing in Venice Ca. Nice to be able to hear the ocean and we got a mini vacation before hand which will be another blog. :)

I am in remission! I am so thankful! I will be resting and getting better day by day! 3 weeks in bed to start with and I am only on week two. I finally put make up on because its my husbands bday. ha! So that is where I have been. Tried to make it short and sweet and to the point. I am going to write a blog when I am feeling better that's more detailed as I am not really suppose to be up yet but I snuck downstairs while everyone was sleeping this morning. Better get back to bed before the MIL comes after me :) PS she saved our lives watching four teenagers for 3 weeks!

Swaps and Pituitary Surgery

What do you do when you have 7 days till Pituitary Brain Surgery? Well you do a SWAP of course!

Some of the items I sent to UK

In one week I will be going to Houston Texas to MD Anderson to have my surgery. I had this same surgery 14 months ago also. I have Cushing's which is a Rare Disease. Cushing's makes you gain weight, have a buffalo hump, moon face, striae, insomnia, mood swings, muscle loss, bruising etc. Sounds fun right? NOT! I have a pituitary tumor that creates too much Cortisol in my body. I had two tumors over a year ago. Had Surgery and went into remission for 10 months roughly before I ended up with another tumor. I am going to fly from California to Texas (halfway across the USA) because is an amazing hospital and the Surgeon does these surgeries all the time.

Pictures of my last Pituitary Surgery

I have had a headache now for 10 days straight. Last night was the worst but its starting to go down a bit finally. Some people might get depressed waiting for the surgery to cause them remission again. I have decided to have a little bit of fun instead. Let me tell you about it.

A Cushie friend of mine Carly and I have been talking a lot during the night when I cant sleep. She is going through the same things that I am. She told me about this International Swap Group and how fun it was. I told her I would love to join. The jest of it is you swap things from your country to their country. Things they are looking for or are interested in. The first swap is 50 dollars (USA) and then mailing the package. You get one swap partner. Send out the package and they send you one from their country as well.

Lesley chose me. She is from the UK. We started talking, took this detailed quiz of our likes and dislikes and asked each other what would be fun to swap. We both went to our local grocery stores and took pictures of things and sent them to each other to see what would look good to us. Along the way we talk and learn about each other. I have found out that she is an avid lover of animals like I am. We actually have a lot in common and talk a lot. We even send each other sneak peaks of what is in the boxes. Its interesting to see what someone would want from the USA. Bath and Body works is something that is really wanted. Along with MAC and Ulta or Sephora make up. You chose a day you are going to send and then both send at same time. Once that swap is complete and both people have their boxes then you can chose to swap with someone else.

Some of the goodies I am getting I am so excited!

I like the fact that they have a detailed quiz and lot of rules to the group. This helps with getting things you like and not things you dislike. For instance I cannot stand the smell or taste of watermelon. It would be disappointing to get things that are all watermelon. I like that I can get postcards for my kids and also learn about the country through that person. Its so fun!

It is good timing too. When I get back from surgery I will have a box to open. How great will that be! I will be in bed for quite some time so the snacks will be helpful and just the fun of having mail. I really love to get old fashioned mail. Makes me feel really special.

I am actually doing another swap with a friend that's off the group just to have a little more fun. I think my favorite part of it is trying to surprise them with goodies. I love shopping for others! Its so fun! Since we live in a rural place though I think my post office had a learning lesson on how to ship fast to another country lol.

This is my new hobby that I am going to just love. I think its great for my family to try new things also from different countries. I cant wait to swap with France or Australia. Pineapple lumps look really good and I want to try some :)

If you have the money or the time to do a swap I would totally suggest it. Its good clean fun and you get to meet some fantastic people! Hey....If you ever want to do a swap with me...I would love that too!

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